The Elephant in the Room

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“So, he is having seizures?”

“Yes, those are seizures,” says the neurologist reviewing my four-year-old son’s video EEG. He continues to look at the screen, clicking on certain areas after a couple of seconds.

“You see those?”

He points to squiggly lines (wave patterns) that appear to peak very high. “Those waves are seizure activity, they are irregular.”

Seizure activity. Irregular. I replay these words over in my mind. An odd sense of relief washes over me. Confirmation. Something is going on with my son, and that something is seizures. The elephant that has been sitting on my chest for the past few months has momentarily gotten up to allow me to breathe- but it doesn’t last long.

“He needs medication,” the neurologist says. The elephant sits back down.

“What kind of medication?” I ask. I look at my son, dozens of electrodes hanging from his gauze-wrapped head, watching T.V.; so young, so healthy before all this happened. What happened?

The neurologist recommends a medication, which will be the second medication my son will try. About one month prior to this hospitalization, it was suspected my son was having seizures. He began having strange episodes of head and neck twitching paired with being unresponsive. We took him to the emergency room, as we couldn’t get a consultation with a pediatric neurologist in less than six weeks otherwise. In the emergency room, a nurse witnessed one of the aforementioned episodes, and a one-hour EEG was ordered. Although the test came back normal, the neurologist on call believed that our son was having seizures, and prescribed medication.

Returning home from the hospital the first time was…frustrating. My son continued to have- what we believed to be seizures- everyday, despite the medication. We diligently kept a log, which included medication time and dosage, and described the episodes in depth to the best of our ability. As per the neurologist’s recommendation, we made several frantic attempts to record the episodes. Although we were doing that right thing by collecting data, it was simultaneously heartbreaking. It felt wrong. One of us would be holding and comforting our son while the other would be grabbing our phone to try and record it before it ended. Each dose of medicine made me feel like I was conducting a science experiment. Would it work this time? Every time he had an episode, no matter how calm we forced ourselves to appear, our world stopped. The air was sucked out of the room in an instant and all that was happening was my son suffering. It was all-encompassing, overwhelming, and draining.

When we were able to see a neurologist for an office visit, he was not convinced that my son was having seizures. “Why aren’t they motor tics?” he asked. My puzzled look gained further explanation. “Some children experience motor tics, and they don’t need to be medicated unless they are severe.”

We left the office so confused that day. Does my son have Tourette’s? Will he get better? We were instructed on how to wean him off the previously prescribed medication and we scheduled a 48 hour EEG.

Each minute waiting for an EEG was an eternity. My son continued to have episodes and we became increasingly worried. Why did they come on so suddenly? What if he had some type of virus? What damage was being done? What is he missing each time he has an episode? We made the decision to take our son to the ER again.

A million questions to answer all over again. This time, an ER doctor witnessed an episode and ordered a battery of tests. Spinal tap, sedated MRI, blood tests, and 48 hour EEG. This was the visit where we got confirmation that my son was, in fact, having seizures.

The type of seizures my son was experiencing are called “myoclonic seizures,” which are generalized (“whole brain”) seizures that involve muscle twitching. We were told that there is a good chance my son will grow out of these seizures as he gets older, but he will have to be medicated for at least two years.

Leaving the hospital the second time felt like a fog had been lifted, but someone was waiting there to punch me in the gut. Every morning, I would get up, elephant firmly planted on my chest, waiting for the next seizure to occur. How long would it be from now? Five minutes? Five hours? How long would it last? Will this new medication stop my son’s seizures?

What will make this elephant get up?

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